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Family Caregiving and Public Policy
Principles for Change*

Page 2

PRINCIPLE 1

Family caregiving concerns must be a central component
of health care, long-term care, and social service
policymaking.

Family caregivers provide approximately 80% of all
long-term services and supports for family members and
friends across the lifespan.3, 4

Services provided each year by family caregivers are
conservatively worth $257 billion, more than double the
annual spending on home care and nursing home care
combined, and comparable to 20% of all health care
spending.5

Family caregivers put their own health and well being at
risk in the service of their loved ones as they
simultaneously save the health care system significant
amounts of money.6, 7

Despite the wealth of services they provide, and in
spite of their staggering numbers, family caregivers
continue to be the most neglected group of the health
and long-term care system. In return for family
caregivers‘ contributions to the public good, society,
through its public and private sectors, must support
caregivers through well-designed policies, programs, and
practices.

PRINCIPLE 2

Family caregivers must be protected against the
financial, physical, and emotional consequences of
caregiving that can put their own health and well-being
in jeopardy.

Among their many roles, family caregivers are integral
but unpaid partners in the health care system. As such,
they provide care at significant costs to themselves
Out-of-pocket medical expenses for a family that has a
loved one with a disabling or chronic condition who
needs help with activities of daily living (eating,
toileting, etc.) are more than 2.5 times greater than
for a family without a family member with a disabling or
chronic condition (11.2% of income compared to 4.1%).8

The majority of caregivers are employed and many are
forced to make changes at work to accommodate caregiving.
Over the course of a caregiving —career,“ family
caregivers providing intense personal care can lose as
much as $659,000 in wages, pensions and Social
Security.9

Family caregivers who provide care 36 or more hours
weekly are more likely than non-caregivers to experience
symptoms of depression or anxiety. For spouses the rate
is six times higher; for those caring for a parent the
rate is twice as high.10

Caregivers use prescription drugs for depression,
anxiety and insomnia two to three times as often as the
rest of the population.11

The stress of intense family caregiving for persons with
dementia has been shown to impact a person‘s immune
system both in terms of increased chances of developing
a chronic illness and in significantly slowing wound
healing.12, 13

PRINCIPLE 3

Family caregivers must have access to affordable,
readily available, high quality respite care as a key
component of the supportive services network.

Respite, often the most frequently requested family
support service,14 provides caregivers with occasional
relief necessary to sustain their own health or attend
to other family members. In emergency situations, a
temporary haven to ensure the safety of the person for
whom they provide care and provide them with a quality
experience as well becomes an absolute necessity.

Without respite, not only can families suffer
economically and emotionally, caregivers

themselves may face serious health and social risks as a
result of stress associated with continuous
caregiving.15

Respite has been shown to help sustain family stability,
avoid out-of-home placements, and reduce the likelihood
of abuse and neglect.16 New preliminary data from an
outcome based evaluation pilot study show that respite
may also reduce the likelihood of divorce and help
sustain marriages.17

Respite, however, remains in short supply for all age
groups, or is inaccessible to the family because of
eligibility requirements, geographic barriers, cost, or
the lack of culturally sensitive programs. Thus,
lifespan systems need to be in place to identify and
coordinate federal, state and community-based respite
resources and funding streams across ages, disabilities,
and family circumstances; to provide easy access to an
array of affordable, quality respite services; to ensure
flexibility to meet diverse needs; to fill gaps and
address barriers in existing services; and to assist
family caregivers with locating, training, and paying
for respite.

PRINCIPLE 4

Family caregivers must be supported by family-friendly
policies in the workplace in order to meet their
caregiving responsibilities. Examples of family-friendly
workplace policies include: flextime; work-at-home
options; job-sharing; counseling; dependent care
accounts; information and referral to community
services; employer-paid services of a care manager and
more.

Currently, only large Fortune 500 companies tend to have
programs to support family caregivers–and then only for
those caregiving for elderly relatives. Few small and
mid-sized businesses–where most Americans work–have
programs supporting family caregivers and are
increasingly cutting paid health benefits as well. As a
result, most family caregivers struggle to balance work
and family responsibilities.

Forty-two percent of parents of children with special
needs lack basic workplace supports, such as paid sick
leave and vacation time.18

Family caregivers are doubly penalized when they
temporarily leave the workforce for caregiving. Not only
may they lose actual pay, but they also lose social
security credits and this can impact their own ability
to care for themselves in the future.